Commentary: Save the Children: Direct-to-Consumer Testing of Children is Premature, Even for Research

1. Andrea Farkas Patenaude, PhD

+ Author Affiliations

1. Dana-Farber Cancer Institute and Department of Psychiatry, Harvard Medical School

1. All correspondence concerning this article should be addressed to Andrea Farkas Patenaude, PhD, Center for Cancer Genetics Director of Psychology, Research and Clinical Services, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA. E-mail: andrea_patenaude@dfci.harvard.edu

• Received July 26, 2011.
• Revision received July 26, 2011.
• Accepted August 4, 2011.

While I am in agreement with Tarini, Tercyak, and Wilfond (2011) about the need for more research on children and genetic testing, I strongly object to their main point, which is that this research should include studies of children's involvement in direct-to-consumer genomic testing (DTC GT). I believe that this recommendation is premature. Having children undergo DTC GT now would expose them to a poorly regulated industry which often markets itself unreasonably ( Federal Trade Commission, 2006) and provides information of highly variable accuracy with little or no established clinical validity (European Society of Human Genetics, 2011b; Robson, Storm, Weitzel, Wollins, & Offit, 2010). DTC GT testing occurs in the absence of involvement of the children or their parents with physicians and, often, with little or no genetic counseling before or after testing. While genomic testing offers great promise for the future, it seems unreasonable currently that medical decision making for children should be based on information available in DTC GT.

Having children undergo DTC GT would, as the authors acknowledge, also be in contradiction to many professional guidelines about genetic testing ( American Medical Association, 1996; ASHG and ACMG, 1995; Bioethics Committee, Canadian Paediatric Society [CPS], Ethical and Public Policy Committee, Canadian College of Medical Geneticists, 2003 , reaffirmed January 2011; British Society of Human Genetics, 2010; European Society of Human Genetics, 2009). It would deprive children of their autonomous right to decide as adults (when, presumably, genomic testing will be much improved) whether or not to learn this genetic information about themselves. It is also, I believe, difficult for the best interests of the child to be adequately considered in the circumstance of DTC GT without a medical intermediary to weigh the complicated risks and benefits of testing for over a hundred genetic conditions (as most DTC …

Commentary: Save the Children: Direct-to-Consumer Testing of Children is Premature, Even for Research